Recipient's Perspective: Part 3

After three months in Tampa, it was great to be home. Still in tough shape physically but happy to be in familiar surroundings. As would be expected with a very weak immune system, there were some pretty heavy restrictions; no salad bars, no exposure to children, no self serve anything, no public swimming pools, no alcohol, no raw seafood, thoroughly wash all fruits and vegetables, avoid crowds, we could keep our dog but not get another for at least a year, and probably a few others that I've forgotten. Over time, months and years, each of these restrictions would be lifted as my immune system continued the recovery process. Initially I was seeing my local oncologist every week, then every two weeks. Trips back to Tampa started at every three months and then went to six months and are now once a year. These checkups were twofold; first to make sure the Leukemia hadn't returned, and secondly to check for any signs of rejection to the transplant. Rejection (Graft vs. Host Disease, GVH) can occur immediately following the transplant or any time after, even years later. I knew the recovery was going to be slow but wasn't prepared for such a lengthy process. Weeks would go by without any noticeable improvement. I was actually getting better but couldn't feel it yet. Each visit to the doctors meant blood tests and the occasional bone marrow biopsy. We could see improvement in the blood work most times and thankfully the bone marrow tests continued to show that my blood was being produced by my new marrow. (Thanks again Kylie) There were some bumps along the road. Following a trip to Oregon to visit our granddaughter I came down with what appeared to be a cold. It didn't get better and finally took a sudden turn for the worse and a trip to the ER. Pneumonia! They got my attention when they told me I was going into the ICU and I realized that this could get ugly. Fortunately a few days in the ICU and a few days in a "normal room" and I was OK. This year the problem has been anemia. I would get two units of blood and then two weeks later need two more. That went on for three months while we tried to figure out where I was losing the blood. After many tests and procedures we're still not sure what was going on but it has stabilized for now. My gastroenterologist and I are now on a first name basis. Also spent a few hours getting iron infusions but along with my red blood cells the iron seems to have stabilized. We check both regularly. All things considered I really feel great. I'm not on any medication related to the leukemia, the restrictions have been lifted and I lead a pretty normal life. This was my third serious cancer and each time I look at things a little differently after recovery. I appreciate a lot of things that I once took for granted. One small example; even after more than three years, I'm thankful that I can take a shower without being hooked to an IV pole or having to cover tubes coming out of my chest. None of us know what tomorrow will bring but I'm grateful to have had great care and that a donor took the initiative to register with the chance to save the life of a complete stranger. I'm thankful each and every day.

Francine's (my recipient's wife) Perspective

I will never forget that day in the Oncologist's office (Sept 1st 2009) when the Doctor told us that Giles had AML and that the prognosis was not good. He handed me a box of tissues and told me to keep them.

He said we could try treatment that would consist of a 30 day stay in the hospital with very strong Chemo in hopes to put the AML into remission. He said there was a good chance Giles would not make it through the 30 days of treatment and if he did, the AML may not go into remission.

Without hesitation Giles told the Doctor he would fight and he has been fighting ever since.

One of the most memorable days was on day 33, when they initially thought the AML had not gone into remission and while it was risky they would repeat the chemo. We were certain Giles would not make it and I told the head of the cancer ward that Giles needed to see our dog, Deuce. Could she help me figure out a way to make this happen? She said absolutely, we will prepare him and you go get your dog Deuce.

Since this hospital did not allow dogs they bundled Giles up with gloves, face mask, blankets and took him outside to the benches at the entrance of the hospital. As we pulled up to the curb Deuce saw Giles sitting on the bench and slowly walked up to him jumped on the bench and calmly laid down in Giles' lap. A few minutes later I turned around and saw hospital staff, patients and visitors stopped to watch this precious interaction all with tears in their eyes.

We got through the 30 days and all the months that followed of chemo and hospitalization, with the support and help of our friends and family.

Feb 2010 I received the call from Moffitt saying they had found a perfect match and we were to start to prepare for the transplant.

While so very grateful for this precious gift, my thoughts were, Will he make it? What will happen and How will we manage this?

Moffitt is 3 hours away and after his initial 30 days in the hospital it would require 90-100 days in the "clean apartment", which meant re locating for this period of time.

Giles could not be in contact with Deuce (or any animals) for the 100 days.

We were told that we needed to ask friends / family for help as care givers.

I work full time, had just started a new job and since Giles retirement I am the "bread winner" for the family.

We are both very independent people and asking for help to this extent was very difficult.

We are blessed with very generous and giving family and friends.

Thankfully my parents had moved to Orlando Florida a few years earlier and Deuce and I moved in with them for this duration.

After work each day I would commute the 1 hour from Orlando to Tampa each night during those 30 days.

Caregivers: We needed care givers for 16 weeks and each care giver needed to attend a class on exactly how to care give for the BMT patient.

During the class we found out what the donor would be doing and we all asked many questions as we were really interested in knowing what they would be going through.

I remember being told to ask no less than 6 people to care give to allow proper rest and breaks for each care giver. They also told us that if you didn't have anyone to provide care giving they would not go through with the transplant. It really hit me again how much you needed the generosity of other's.

Our friends and family were so generous in offering to provide care giving to Giles and also to allow me to work at the same time.

The plan was for me to work during the week and on Friday afternoon drive to Tampa to relieve the care giver's and ready the apartment for the next week's set of care giver's.

Since they weren't exactly sure when Giles would be moved to the clean apartment and Giles would be at his worst in the first 4 weeks, My mother and I took the first two weeks of care giving, then came his Sister Barb and her husband Fred, who lived 2 hours away.

Next was our good friends Gail & Bill, I can still remember Gail's expression when I told her what they would have to do as care giver's: Ensure he ate 3 times a day; took all his pills; drank X amount of fluids each day; took his temperature 3x a day, walk with him for 1 lap around the apartment complex and drive him to Moffitt each day for his appointments. She looked at me like I was kidding, two days later Gail and I were talking and she said I cant believe how hard it is to get him to do these basic things.

Care giving also meant cleaning the apartment from top to bottom each day.

Our good friends Peter and Liz came and provided a week of care giving. Giles sister Nancy and her husband Joe came from California for two weeks as care givers.

Giles' son's both took time off from their jobs and flew to Tampa for a week of care giving, thankfully by then Giles was feeling more human and could enjoy their company.

Care packages: So many people sent cards and care packages with puzzles, paper plane making books, etc since we were apartment bound you needed to find things to do inside.

Skype was also a big help to allow the ease of communication.

My mother bought camera's for our laptops so we could Skype each night and Giles could see Deuce and Deuce could hear Giles' voice.

On July 5th we came home, 96 days after admission ready to face our "new normal" and the rest of our journey and thankful for you Kylie, our good friends and our family.

Recipient's Perspective: Part 2

Part 2 is here!

After about a month of feeling fairly normal, a few trips to Tampa for preliminary tests, and classes on what to expect as a patient or a care-giver, it was now April 2010 and time to check-in as an in-patient at the Moffitt Cancer Center.

While the initial chemo (in West Palm Beach) was very strong, we were warned that the pre-transplant chemo would be even stronger. They were correct. Essentially they completely kill your bone marrow so that all blood being produced after the transplant will come from the new marrow. As in the past, the reaction to the chemo wasn't immediate and when I got the transplant I was still feeling fairly good. We didn't know why at the time but the transplant was delayed one day and we were told it was being flown in and would arrive late the day of the planned transplant. Too late to administer that day since Moffitt had to do their own testing on the stem cells and would only perform the transplant during the day when the hospital is fully staffed. We now know what caused the delay. Sorry you had to do a second day Kylie.

The actual transplant (receiving the stem cells) was much easier for me than for Kylie. It was very much like getting blood; hook up bags to a pump to regulate the flow, adjust and let it drip. But that was the end of the easy part. Now the chemo is starting to rear its ugly head so I'm not feeling great. I have no white blood cells so there is great risk for infection and we have to watch very carefully to make sure my body doesn't reject this important new material. A 10 for 10 match greatly reduces the risk of rejection but doesn't eliminate the risk completely. Once again, loss of hair, weight and appetite along with a variety of pain medications. All from the chemo, not the transplant. They actually have a candy cart go to each room every afternoon with candy and cookies, hoping you will at least eat something, even if it is junk food. There were a few days when I couldn't eat anything, not even M&Ms.

As the month progresses so does the healing. With daily blood tests and occasional bone marrow biopsies my progress continues and by the fourth week I'm feeling a little more human; and counting the days until I can get out of there. Tests reveal that my new marrow is starting to produce healthy blood cells. Great news!

During this month my wife is busy working almost full time, visiting me, and working with friends and family to schedule care over the next two months when I'll be in the clean apartment near the hospital.

Finally, discharge from the hospital and off we go for the 5 minute ride to the apartment. Nice, modern, 2 bedroom 2 bath apartment reserved specifically for Moffitt patients and kept spotless between patients by Moffitt employees. Without any problems, friends and family came (from Florida, Oregon, California and Pennsylvania) for a week at a time to help with my care. They cooked, cleaned, did laundry and took me to the hospital for my tests and to pick up various prescriptions. It felt like a real breakthrough when we didn't have to go every day. I'm very grateful for all of the work involved to make that happen.

While I continued to improve, the progress was frustratingly slow and at the end of the two months in the apartment I felt much better but far from normal. Looked at another way, I was doing very well for someone who had a disease that kills two out of three people. The trip home seemed to take forever but it was great to walk into our own house (and crawl into my own bed).

Part 3 will cover the continued treatment and healing.

Recipient's Perspective: Part 1

I am very excited to share this with everyone. This is part one of a three part installment from my recipient about his experience with our stem cell transplant/donation.

While playing golf at the end of August, 2009, I noticed an unusual pain in the side of my neck where I had surgery several years ago. I go to our family doctor who wants an ultrasound to see what's going on. First ultrasound was inconclusive so I'm sent to the emergency room where they have better equipment. As a standard ER procedure, they drew blood upon admission and then sent me for the ultrasound. A short time later, the ER doctor comes out and says "I'm not worried about your neck: you have no white blood cells! You need to see an oncologist ASAP"!

After a very long weekend, I go to the oncologist who looks at the ER blood work as well as his labs blood work and has me lie face down on the exam table and draws marrow from my hip. (with a local anesthesia) I get a call that night from the oncologist; I have Acute Myeloid Leukemia, he wants to see me and my wife first thing the next morning so we can discuss the treatment for AML.

"Pack a bag and check in to the hospital in West Palm Beach and plan on being there for 30 days. If the AML goes into remission from the chemo, we will look for a bone marrow donor. The prognosis isn't good"!

Physically I feel absolutely fine, none of the symptoms normally associated with Leukemia; fatigue, weight loss, fever, and a few others. I'm not sure what would have happened if I hadn't had that pain in my neck.

About three days after the first dose of chemo, I was no longer feeling fine. It really knocks you for a loop but I didn't have a lot of problems with nausea for which I'm thankful. So after losing all of my hair, most of my appetite, 40 pounds, and experiencing a variety of pain medicines, we were approaching the 30 day mark and hopefully seeing the AML go into remission. Additional bone marrow biopsies weren't promising and there was concern that they would have to repeat the first (strong) chemo which could possibly kill me; but there weren't any other options. Another biopsy a few days later gave us the good news; remission. The search for a donor could begin. Based on my age (70) I needed a perfect match, 10 out of 10 of the parameters they use to determine compatibility. We were told to expect a delay of a few months before the actual transplant, assuming they found a donor. Those few months were spent with return trips to the hospital for additional chemo, only for a week at a time, and two trips for the expected problems with infections.

We found out in late February that we had a donor and should plan on checking in to the Moffitt Cancer Center (Tampa) in early April for even stronger chemo, and then the transplant followed by close monitoring to make sure my body doesn't reject the transplant. This would begin 6 months post diagnosis. If all goes well it would be one month in the hospital followed by two months in a "clean" apartment within 10 minutes of the hospital. At some point, we were told that the donor was a 21 year old female from the US but that was all we could be told at the time.

The month preceding the trip to Moffitt was actually pretty comfortable, I felt almost human. I also knew that this was about to change.

Stay tuned for the continuation of his perspective coming in Part 2!

Big News

The blog is going to have some guest posts coming soon!

My recipient and his wife (thank you both!) are working on posts of their own recounting what the donation was like for them. It will be very interesting and eye opening (hopefully for everyone who reads this blog) to see the story from their perspective rather than from mine.

A third guest post is in the works from a reader of the blog who reached out to offer his story about his experiences with his wife's battle with cancer.

I won't give too many details as I don't want to spoil the posts so please keep an eye out for them soon!

Update #2 - 3 Years Post-Donation

Now is as good a time as any to make a second update on my blog since some very exciting changes have happened since my first update.

This past fall (I believe in September or around there, maybe a little later) I received a call from the Rhode Island Blood Center saying that they had some news for me, could I please give them a call back. So at the first chance I got, I called back. The news they gave me was wonderful - my recipient had signed paperwork requesting that we exchange contact information!

Considering that I had been warned not to be too hopeful of this exact thing happening it was music to my ears to hear that my recipient was the one to initiate the process of undoing the anonymity between us.

I filled out my half of the forms, scanned them, and e-mailed them in to RIBC. Then waited, and waited, and waited some more. It was quite the waiting game, these things have always seemed to take some time. Finally on March 7, 2013 my recipient's information arrived in my inbox. Where it sat until 2 nights ago.

Let me elaborate: it isn't that I didn't want to e-mail my recipient, because I did. The struggle I had was what to say. How do you start an e-mail to someone who you do not know, yet, feel so closely connected to?

I didn't have an answer to that. So my e-mailed waited. Then, two nights ago, after getting home from work, I couldn't sleep. My mind kept cycling through things I could say to my recipient. Since I didn't know what to say I was thinking of all the things I could tell my recipient that would tell him about me as a person. An e-mail began to form so I got out of bed, sat at my laptop, wrote it and clicked the send button. Initially I thought I would just get up, type my thoughts out, save it as a draft and then re-visit it later. But instead, it just felt right to click send

. Yesterday I received a response, two as a matter of fact (one from my recipient and one from their spouse). My heart is so filled with joy and excitement. I am hopeful that we will remain in touch and become friends.

I will continue to keep you updated.

Update

Doreen from RIBC called me today with news on my recipient, the blood center finally got the update we'd been waiting on...

My recipient is alive and doing well! Doreen said that they receive very coded responses when they get updates from other donor centers but what she could tell me is that his recovery is going well and that it is unlikely he is completely back to pre-transplant activities. She said that it is often a long recovery period and that it isn't uncommon for recipients to need plenty of time to resume normal activity levels.

I want to write him a letter, but it is so hard to begin. What do you say to someone when you can't reveal too much personal information? Doreen suggested I use lots of open-ended questions but even trying that makes it hard to write a cohesive letter. I guess I just need to sit down and concentrate solely on the letter (no distractions).